​Several studies have shown that a large percentage of women who face mastectomy are unaware of their reconstructive options.

That may be a bit surprising, considering the amount of information that is now available, but many sources of information may be unavailable in your area or they may not be sufficiently comprehensive. ​

While solid information about mastectomy and reconstruction can be found online, it isn't isn’t always comprehensive, objective, and sometimes it isn’t correct.

Surgeons don't always have the time to adequately discuss various options in the detail women need to consider their postmastectomy possibilities. And surgeons tend to describe and discuss the procedures they perform, and not necessarily the ones they do not.

Even helpful friends who have already had breast reconstruction can share only their own experiences...which may not be the same for you.

The number of women who remain in the dark about their reconstructive options remains high. So, in 2011, Dr. Mitchell Brown, a Canadian plastic surgeon, proposed a significant effort to help turn that around: a single day each year that would be used to build awareness of breast reconstruction.

The following year, The American Society of Plastic Surgeons (ASPS) supported the effort in the United States; Breast Reconstruction Awareness Day is now recognized annually on the third Wednesday of October.

The information-rich events continue to expand each year, with a variety of educational events held in most states. In 2016, nearly 200 ASPS members and organizations participated in raising awareness around the United States.

This year, Breast Reconstruction Awareness Day is October 18. If you have a mastectomy in your future, whether to treat or prevent breast cancer, and you’re looking for more information about your post-mastectomy options, check out the list of events being held in your state.

And be sure to pick up a copy of the new, updated 4th edition of The Breast Reconstruction Guidebook. First published 15 years ago to help answer women's questions about mastectomy and reconstruction, it clearly explains different types of mastectomy, "going flat" (foregoing reconstruction), and all the different methods to rebuild a woman's breasts. It’s all the answers you’re looking for in one handy source.

If you’re facing mastectomy to treat or prevent breast cancer, you have a lot of decisions before you. Will you keep a flat chest after surgery, wear temporary breast prostheses, or have your breasts reconstructed? If you do want to have breast reconstruction, is your priority to have the shortest procedure with the quickest recovery or to pursue a method that will give you the most natural breasts possible? Does keeping your own nipples and areola appeal to you? Do you have quite a bit of excess fat that you’d like to be rid of in the process?

Plastic surgeons have been recreating breasts for decades. Technological innovation and surgical improvements in the 15 years since The Breast Reconstruction Guidebook was first published now make reconstructive results with breast implants or your own tissue better than ever. If you’re interested in breast implants, you might choose cohesive silicone gel “gummy bears” that retain their shape and feel more like breast tissue.

If you’d like to avoid the traditional method of tissue expansion that creates a space to hold your implant, you might be a candidate for nipple-sparing mastectomy with a direct-to-implant procedure, which completes in a single visit to the operating room what reconstruction with tissue expanders takes months to accomplish. (Solid data show that nipple-sparing mastectomy, considered to be unwise just a few years ago, is safe for most women, even many who are treated for breast cancer.) If your reconstruction is done with tissue expanders, perhaps you’ll prefer to control the speed of your expansion at home, avoiding routine office visits and shortening the overall reconstruction process.

“Flaps” of your own excess fat can also be sculpted into new breasts. Plastic surgeons continue to push the reconstructive envelope, developing better flap techniques and procedures that provide more predictable results and shorten recovery. Some tissue flaps use muscle along with skin and fat to rebuild the breast, but other more sophisticated options spare the muscle, preserving function and making for less intense recovery. These microsurgical tissue flaps, including DIEP (deep inferior epigastric perforator), GAP (gluteal artery perforator), TUG (transverse upper gracilis), and others, are no longer considered weird or experimental, and options for rebuilding your breasts with excess fat from your abdomen, back, buttocks, thighs, or hips are numerous.

And flap reconstruction comes with a bonus: new breasts and a slimmer donor area. Methods of nipple reconstruction have also improved. Or like a growing number of women, you may prefer to have three-dimensional nipples tattooed onto your reconstructed breast, giving a lifelike illusion of having nipples where there aren’t any.

One of the most exciting reconstructive innovations is fat grafting—liposuctioning your own excess fat and carefully injecting small amounts into your reconstructed breast. Although fat grafting has been used for many years, recent improvements make it far more practical and successful, ensuring that more fat stays in the breast.

Adding fat to the new breast can refine shape, increase volume, and improve contour with minimal downtime, making a good reconstruction even better. Perhaps the most important change is the increasing number of plastic surgeons who now routinely offer breast reconstruction, translating to more accessible experience, skill, and choice.

One thing that hasn’t changed in 15 years is that women who consider breast reconstruction share a common dilemma: “What is the best option for me?” Because no single procedure is right for all women, the wisest approach is to first carefully consider the alternatives; consult with two or three experienced, skilled surgeons; and then determine which reconstructive method, if any, matches your personal preferences and priorities.

Fortunately, mastectomy and reconstruction are no longer one-size-fits-all. You have options, but that also means you need to make decisions. You may not be a candidate for all procedures. If you’ve undergone radiation for breast cancer, for example, that poses some reconstructive limitations. Some choices may not be available in your area or within your health insurance network. Others may not interest you, because of the investment in time or recovery. With you in the driver’s seat, you’re less likely to have regrets about how your reconstruction is done, and you’ll know what to expect in the hospital and at home during recovery.

Like its preceding versions, this edition of The Breast Reconstruction Guidebookwas written to answer your questions, demystify confusing terms and concepts, and help you go from confused to confident. The text is deliberately objective. It doesn’t favor or recommend one procedure or another, because that’s up to you to decide.

What’s most important, particularly if you’re feeling that you’ll never be the same, is that after mastectomy, you can have symmetrical, soft, rounded breasts. They won’t feel the same as your natural breasts, but many women find that their new breasts look as good or better.

Reconstruction isn’t perfect, and it isn’t always easy. It can’t undo everything mastectomy takes away or replace lost sensation or the ability to breast-feed. But it can restore your post-mastectomy profile and profoundly affect your self-image and peace of mind, so that you can get on with your life, while you wear all the clothes you wore before your mastectomy and look natural again without your clothes.

As someone who has twice confronted breast cancer and twice had reconstruction, I understand just how you feel. I know firsthand that sorting through the various reconstructive options can be a confusing, time-intensive, and frustrating experience. By the time you’ve read through this book, you’ll feel more confident in your choices and understanding of mastectomy and reconstruction.

You may decide to go ahead with reconstruction. You may not. Either way, you’ll know what to expect.

And even if you decide that reconstruction is not for you, after reading through different parts of the book, you’ll have a good understanding of breast cancer, mastectomy without reconstruction, and what to expect from your surgery and recovery.

How will the next 15 years change mastectomy and breast reconstruction? I hope that science is driving us toward a time when mastectomy will be archaic, and this book will be obsolete. But discovery isn’t easy, and the development process isn’t quick. Sooner or later, scientists will discover how to repair defective genes that cause disease. Women diagnosed with breast cancer may undergo gene therapy without needing chemotherapy or radiation.

We’ll move breast cancer to the list of diseases we no longer need to fear, and mastectomy will no longer be needed. Until then, reconstruction is our best antidote for replacing lost breasts.-------------------------------From The Breast Reconstruction Guidebook (2017), Johns Hopkins University Press

Women who have radiation therapy as part of their breast cancer treatment typically receive radiation for 30 days --5 days per week for 6 weeks--to improve their survival, but a phase 2 clinical trial suggests that radiation therapy for half that time is as safe and effective for women who have already had a mastectomy.

The trial was small, including just 67 women with stage II to IIIa breast cancer at Huntsman Cancer Institute at the University of Utah and Rutgers Cancer Institute of New Jersey. Patients received higher levels of radiation for 15 days, compared to the traditional delivery of somewhat lower levels for 30 days. The women were then followed for an average of 32 months to determine whether higher daily doses of radiation increased the risk of infections, wound healing and other complications.

The women fared better than researchers expected, having fewer side effects and lower rates of recurrence. They experienced less skin redness (a common side effect of radiation therapy) and less fatigue than women typically experience after 6-week sessions. No significant toxicities were found.

Only half of women had breast reconstruction; related complications were similar to what has been observed in other trials with a longer course of radiation. Study coordinator Matthew Poppe, MD, said, “We hope in time this will result in improved cosmetic outcomes, as other studies have shown that by shortening the course of radiation, cosmetic outcomes are improved.”

The study was designed in an effort to improve the quality of life for women who need radiation after mastectomy. A shorter, effective course of radiation would hopefully be less stressful and more convenient for many patients. They would be able to spend less time away from home, and return to work sooner. It would also be more beneficial (and potentially lifesaving) for many women who forego treatment because they don’t live near a cancer center or other facility that provides radiation therapy.

A phase 3 clinical trial of the shorter radiation course is scheduled to begin later this year. It is expected to enroll about 900 patients at various cancer centers in the U.S. and Canada.

image: National Coalition for Health Professional Education in Genetics

If you’re considering genetic testingto see if you have an inherited risk for breast cancer, consulting first with a certified genetic counselor just might save your breasts.

Any physician can order a genetic test; but genetic counselors are specially trained to discuss whether it makes sense for you to be tested (it’s not right for everyone). After testing, a qualified genetic counselor can interpret your results, estimate your risk, and if appropriate, discuss risk management strategies.

A genetic counselor’s input can be particularly important involving variants of uncertain significance (VUS), changes that occur in a gene, but whether that change is harmful and interferes with the gene’s normal tumor-suppressing ability and therefore raises the risk of breast cancer, is unknown. Unlike a test result that shows a clear indication of a genetic mutation, a VUS doesn’t provide a clear answer about an individual’s risk.

A study published earlier this year by researchers at Stanford University School of Medicine, University of Southern California, Emory University and Memorial Sloan-Kettering Cancer Center underscores the important role of genetic counselors, particularly involving risk management strategies for VUS.

When researchers surveyed 2,500 newly diagnosed breast cancer patients and the surgeons who treated them, they discovered that many of the women had potentially unnecessary mastectomies, perhaps because they and their doctors didn't understand how to interpret genetic test results:

Only about half of the women who had genetic testing discussed their results with a genetic counselor. (Surgeons and oncologists ordered most of the tests; only about 1 in 5 was ordered by a genetic counselor.)

50% of surgeons who saw 0-20 new breast cancer patients in the past year and 24% of surgeons who saw 50 or more new breast cancer patients in the past year reported that they were less confident discussing genetic testing results with patients, and recommended the same treatment—bilateral mastectomy—for women with VUS as they did for women with genetic mutations that are known to significantly raise breast cancer risk.

Up to a third of surgeons rarely referred patients for genetic counseling; many said they never delayed surgery so that genetic testing results could be available before making treatment decisions.

51% of women who were found to have a VUS in a gene that increased cancer risk or no mutation at all had bilateral mastectomies, treatment that is considered to be extreme and unnecessary for women who do not have known harmful mutations or other inherited factors that raise risk.

Why is this important?

In breast cancer patients who have a BRCA mutation, bilateral mastectomy increases survival and reduces the risk of a second breast cancer. It does not, however, increase survival for women of average risk.

Clinical practice guidelines clearly state that variations of unspecified significance are mostly benign and should not be considered to confer high cancer risk. Patients with these variants should be considered at average risk for breast cancer and should be counseled similarly to patients whose genetic test is negative for a mutation. In other words, mastectomy is not recommended for these women. Yet this study shows that many patients don't understand the meaning of a VUS, while too many physicians mistakenly believe that a VUS means high cancer risk and they recommend mastectomy for VUS patients, just as they do for patients with mutations that are known to increase risk.

Genetic testing is a specialty; a specialty that is best provided by qualified genetic counselors.

Experts recommend always seeing a genetic counselor before and after testing.

If you’ve already been tested and notified that you have a VUS, consult with a genetic counselor, even (and especially) if a surgeon or other health care professional ordered the test (unless that professional is also certified as a genetic counselor). Even if your VUS results was given years ago, check with the laboratory that performed your test or a genetic counselor periodically to determine whether your VUS has been reclassified, which can occur as more information about a particular VUS becomes available. It may just save your breasts.

More and more women are traveling for breast reconstruction, but like skinny jeans and whipped cream, traveling to a distant surgical facility isn’t for everyone.

The thought of facing such a big operation away from home may seem overwhelming, particularly when you’re having to come to grips with the idea of losing your breasts, so you might ask yourself why anyone would deliberately add travel into the mix. The fact is, most women who have reconstruction do so close to home; however, there are many good reasons why traveling for breast reconstruction has become more appealing.

Maybe you have no reconstructive surgeons nearby. Or maybe you have your heart set on an advanced procedure--direct-to-implant,DIEP, GAP or TUG—but your local surgeons offer only traditional reconstruction (expander-to-implants, TRAM or latissimus dorsi flaps) that may involve lengthier recovery. In that case, you may need to travel to a nearby city, an adjacent state or across the country to find surgeons who perform the newer procedures. The good news for those who are willing to travel for breast reconstruction is that more surgeons now perform advanced procedures, increasing the chances that an experienced surgeon may be closer, rather than farther from your home.

Other factors may also influence your decision. You may want to travel to a highly-recommended surgeon or one who is more experienced with the procedure you prefer. Having extended family in a city with experienced plastic surgeons might also sway your decision, and be kinder to your budget. And the type of reconstruction you want may also play a role. If you’re interested in GAP reconstruction (where fat is moved from the upper or lower buttock to create the new breast), for example, it may be important to you to find a surgeon who performs bilateral simultaneous GAP, rather than others who perform GAP only one side at a time.

Cost can also be a significant factor. In many cases, it can be a deal breaker, especially if your healthcare company covers the cost of reconstruction only by surgeons and facilities in a preapproved network. In any case, health insurance does not typically pay for travel expenses or hotel costs related to surgery, and your out-of-pocket expense will be higher.

Journeying to another city for your surgery entails more time, cost, and careful planning, but after considering everything involved, you may find that it is worthwhile to pack up for a few days to get the surgeon and procedure that you want. More and more women are doing it, and out-of-town patients now make up a considerable part of many reconstructive practices. Your surgeon’s patient relations coordinator can facilitate your consultation appointment, coordinate insurance coverage, and help you navigate other facets of your surgical experience.

If you’re thinking about traveling for your breast reconstruction, consider the following:

Do your homework when choosing a remote surgeon. Research his/her expertise and skill with the procedure you desire, as you would for a surgeon in your own hometown.

If you can manage it, you can drive or fly in for a consultation and return home the same day. If that doesn’t work, you can swap information, including photos of your breasts and donor site, by e-mail, followed by a phone consultation.

Be clear on what to expect regarding the length of your hospital stay, how long you’ll need to stay in town (with family, friends or in a hotel) before returning home, when you’ll be able to return home, and the timing of your post-op check-up.

Once your surgery date is set, you can complete all the necessary pre-op testing in your hometown, with a copy of the results forwarded to your distant plastic surgeon.

Ask the remote surgeon’s office about accommodations; many offices have pre-arranged discounts at hotels for post-surgery recuperation.

Consider how you will arrange for childcare (if necessary) while you’re away.

Arrange for follow-up care if needed when you return home, and a local surgeon who can handle any infection or other post-op problems that may occur.

Fifth-generation highly cohesive silicone breast implants (both round and shaped) are available in the U.S. by three manufacturers: Mentor (MemoryShape), Allergan (Natrelle 410) and Sientra (Silimed). In the United States, 90% of all breast reconstruction with implants involves these so-called "gummy bear" breast implants, which offer several advantages over breast implants filled with saline or earlier-generation silicone gel:

They are said to be form stable: they retain their shape as you move, stand up and lie down, and better retain their shape over time.

Silicone from a ruptured gummy bear breast implant is less likely to leak into the breast or beyond: it holds together in a single mass, like Jello or gummy bear candy when it is squished together or even cut in half.

Because highly cohesive gel doesn't shift as other implant fillers do, wrinkles and ripples (more of a problem with saline implants), and folds that often cause implant leaks are less likely. This not only improves appearance, but limits friction and tension that may weaken the outer shell; cohesive silicone gel breast implants are expected to last longer than earlier models.

Shaped implants (also called "anatomic" or "teardrop") mimic the shape of natural breasts with gradually-sloped tops and full bottoms, rather than the “half-grapefruit” appearance that often results from round implants.

The outside shells of all shaped breast implants are textured to help hold the implant in place so that it doesn't rotate or tip in the pocket.

Although long-term data is not yet available, gummy bear breast implants are believed to reduce the rate of capsular contracture (the most common problem and source of reoperation with other breast implants).

Gummy bear breast implants may be an improvement over older models, yet despite a high rate of patient satisfaction and reported lower problem rate, they are still subject to problems that are inherent to all implants:

They are more expensive than saline or previous silicone versions.

Like other types of breast implants, gummy bears are not lifetime devices and need to be replaced sooner or later.

Compared to saline and non-cohesive gel implants, a larger incision is required.

The risk of rupture, although reduced with highly cohesive silicone gel implants, is not eliminated. The FDA recommends MRI screenings beginning three years after the implant is placed and every two years after that to detect “silent” rupture.

Misfortune sometimes spurs innovation. One example for women who have breast reconstruction after mastectomy is an improved surgical bra that is practical and comfortable, thanks to one woman’s personal post-op experience and the desire to make the recovery process easier for all women who have breast reconstruction.

While wearing a surgery bra as she recovered from a double mastectomy and breast reconstruction, radiation oncologist Dr. Elizabeth Chabner Thompson considered how outdated compression garments could be improved upon.

Realizing that the design of surgical bras had remained unchanged since the 1970s, Thompson surveyed plastic surgeons and patients to confirm what was needed: surgical bras that not only provided adequate compression, but were also more comfortable and definitely more attractive at a time when women need to heal and feel good about themselves. Thompson then set out to develop a product that would satisfy these goals.

Wearing some type of compression garment to promote healing is recommended after most major breast surgeries: augmentation, breast lift, breast reduction, and breast reconstruction. Surgical bras promote healing by exerting constant mild pressure on the new breast; this reduces post-operative swelling and bruising, and supports the desired position of the reconstructed breast. Surgical bras are important after any type of breast reconstruction. They gently hold breasts created with autologous tissue flaps in place, and they are particularly helpful for women who have reconstruction with breast implants, because a surgical bra stabilizes the implant in position from the side and bottom while the pocket heals.

After breast reconstruction, a surgical bra is worn 24/7 (except while showering) for several weeks until the plastic surgeon determines that you have healed sufficiently to progress to a normal bra (or none at all if you prefer).

The result of Dr. Thompson’s efforts is the Elizabeth Pink Surgical Bra™, designed with both the surgeon and patient in mind. The pink, front-closing bra features:

appropriate support compression.

a Velcro front closure.

durable, soft fabric that is kind to sensitive skin.

adjustable padded shoulder straps for a comfortable fit.

side openings and small rings that hold annoying-but-necessary surgical drains in place against the body.

comfort without chafing.

Based on the instructions of individual plastic surgeons, many hospitals provide a specific type of surgery bra; some surgeons instruct patients to purchase their own garment and bring it to the hospital on the day of surgery. Numerous hospitals now provide the Elizabeth Pink Surgical Bra to their breast reconstruction patients. The bra is also available from Amazon and other online retailers, including Dr. Thompson’s own company, Best Friends For Life (BFFL), which develops products that help patients to recover from surgery and other medical treatments in comfort and with dignity.

Always follow your plastic surgeon’s instructions regarding use of surgical bras, how long you should wear them, and other recommendations for your recovery.

Many hospitals in the US now provide the bra after reconstructive breast surgery. For more information or to order directly visit AmazonorBFFL.

Breast reconstruction is performed to recreate breasts after mastectomy, but it can also help men or women who are born with Poland Syndrome, a rare congenital condition. Poland syndrome is almost always sporadic (not hereditary) and tends to occur on the right side of the chest. The cause is unknown.For individuals with mild cases of Poland Syndrome, one breast doesn’t mature beyond puberty, remaining smaller than the opposite unaffected breast. In others, the nipple and some or all of the breast tissue may be absent. In the most severe cases, part or all of the pectoralis chest muscle and underlying ribs and breastbone are underdeveloped or missing.

Men are more frequently born with this condition than girls. For them, a custom silicone pectoral implant can replace the chest wall defect and establish symmetry. For women who have little or no breast tissue, having Poland syndrome can be somewhat like being born with a mastectomy, and breast reconstruction procedures can help restore what Nature forgot, just as it does for women after mastectomy.

Repairing a woman’s Poland syndrome is more complex, because it involves replacement of more tissue. Fat grafting can help improve mild cases of the condition by replacing missing breast tissue. In more challenging cases, plastic surgeons use the same procedures as they do for women who have delayed reconstruction. Traditionally, this has been done with tissue expansion and a breast implant, or transferring tissue and a muscle in the back (a latissimis dorsi flap) or the abdomen (TRAM flap) to the chest.

Today, autologous tissue flaps, including perforator flaps (DIEP, TDAP, etc.) that transfer skin and fat but don’t require muscle, are also used to correct Poland syndrome deformities. The procedures rebuild the missing (or partially missing) breast by bringing healthy, living tissue to the chest. Tissue expanders may also be used, with or without an acellular dermal matrix.

Reference: National Institutes of Health, Library of Medicine. https://ghr.nlm.nih.gov/condition/poland-syndrome#statistics

Not so long ago, talking about breast cancer (or the threat of it) was taboo. Few women spoke openly about their fears of diagnosis, dealing with treatment, or the after-effects of mastectomy. These feelings were personal and held tightly, leaving many women feeling alone and unaware of the sisterhood of women before them who had struggled with the same issues.

But things have changed, and for the better. An overwhelming amount of information is available now about prevention, surveillance, diagnosis, treatment and beyond. It’s still a scary road, the cancer journey, but knowing so many have gone before—how they felt, what they experienced, and how they triumphed—can be informative, enlightening and comforting.

In the past few years, numerous women have published memoirs about their breast cancer experiences, and now, in a notable new entry, a California woman openly shares the challenges of living with a high-risk BRCA2 gene mutation.

Life in Asymmetry: A hopeful journey over the peaks and valleys of genetic breast cancer is Raychel Kubby Adler’s heartfelt and straightforward story of a family that has been deeply impacted by a hereditary BRCA gene mutation that significantly raises the risk of breast, ovarian and other cancers. She is unabashedly honest as she chronicles the role of her own breasts—from “mosquito bites” to “double whammies” to “time bombs”—throughout her life, and sharing the painful experience of losing her mother and sister to breast cancer. She writes of her decision to undergo double mastectomiesto reduce her own risk of breast cancer, and of the subsequent medical setbacks she suffered while pursuing breast reconstruction.

Adler eloquently expresses the profound and heartbreaking impact of breast cancer on her family, of the difficult decisions to reduce her own risk, and her fears and hopes for her daughters. Her story is one of heartbreak, persistence, strength and hope, and is sprinkled with humor throughout.

Several studies have shown that breast reconstruction can help women cope emotionally and psychologically with the effects of mastectomy. Although reconstruction is a personal choice that may not be right for every mastectomy patient, many women say that having new breasts helps to restore their confidence in how they look and feel after losing their own natural breasts.

Study summary
This research is thought to be the largest prospective study to-date of patient-reported outcomes that reflect quality of life after immediate breast reconstruction.

One year after their breast reconstruction, women who had breast reconstruction with implants expressed the same level of satisfaction as they did before they entered the operating room.

In contrast, women who had flap reconstruction were more satisfied than they were before their surgery. This might seem odd, given that reconstructed breasts have little sensation. However, many women are unhappy with size, position, sagging, asymmetry, or other cosmetic aspects of their natural breasts and overall body image. Study authors noted that, ‚ÄúThis improvement may relate to the fact that patients who are eligible for flap reconstruction often have higher BMIs and large breasts. In such patients, reconstruction often is accompanied by a contralateral symmetrical breast reduction, and this might contribute to patient happiness about the size and shape of their breasts overall.‚Äù

More concerning is the finding that physical well-being in the chest and physical functionality continued to be an issue 1 year post-op for women in both groups. Patients reported pain and tightness that remained after 1 year (women with implants reported more symptoms than their counterparts who had flap reconstruction). According to the study authors, ‚ÄúThese results likely relate to that the significant nerve disruption from surgery and that requirement of elevation of the pectoralis, and often serratus, muscle for implant reconstruction.‚Äù Women who had abdominal flaps also had problems at the 1-year mark, reporting abdominal discomfort and weakness.